IPOPI’s recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor Jose-Luis Valverde (University of Granada, Spain) looking at Health Technology Assessments (HTAs) and Rare Diseases Therapies. Health Technology Assessments (HTAs) in Europe and similar assessment procedures in other regions such as comparative effectiveness in the United States, are increasingly being […]
This issue of the Pharmaceuticals Policy and Law series (Volume 10) published by IOS press and edited by Professor Jose-Luis Valverde, was co-edited by David Watters, IPOPI and released in February 2008. The publication brings together articles from various expert authors representing key Primary Immunodeficiencies (PID) stakeholders such as patient representatives, physicians, regulatory agencies, policy […]
This is the first international survey carried out by IPOPI. The survey was conducted between February 2010 and August 2010 to establish a mapping of several criteria among IPOPI’s NMOs including estimated number of patients in each country, known diagnosed PID cases, patient demographics, presence of registries, collaboration with international registries, provision and funding of […]
Maj-Lis Hellström, founder in 1978 of PIO, the Swedish organisation for patients with primary immunodeficiency, and an officer of the IPOPI board for eight years, has put together a collection of stories from 14 countries. 49 authors mainly patients and parents, but also doctors and nurses have contributed to this book. In reading the book […]
A helpful guide for patients and caregivers By Sara J. LeBien CONTENTS: Section One WHAT HAPPENS AFTER THE DIAGNOSIS Section Two WHAT TO EXPECT AS YOUR CHILD GROWS OLDER Section Three ADULT ONSET Section Four IMPORTANT ELEMENTS FOR SUCCESSFUL COPING Section Five SUMMARY OF DO NOT’S WE SHOULD BE AWARE OF Section Six SUMMARY OF DO’S TO KEEP IN […]
